Mommy is getting increasingly more emotional as we countdown the days to our departure. Reality has set in. Gracie and I are moving away from our loved ones for a significant amount of time. Not only that, but we will be entering a pretty scary type of environment. Hospital rooms, chemo, machines beeping all day and night... doesn't sound like much fun. But we will make the best of it and keep our eyes on the prize- a triumphant return home with a Gracie full of healthy, active, enzyme-producing cells! Our tickets are booked and let me tell you how hard I cried when I booked those one-way tickets to Minneapolis. :(
At least I can keep telling myself that Gracie will never remember any of this and find that comfort in even the worst of times. She's my little trooper, and she's shown such amazing grace (pardon the pun) in dealing with everything thus far. I just know in my heart that she will continue to fight this fight in her own special way. God bless her little fighter's heart.
On the upside, I am looking forward to spending some time with our Uncle Mack again though. :) He's always been a huge light in my life. (no blushing, Mackie!) What a lucky couple of girls Gracie and I are to have such an amazing family on both my side and Jimmy's!
Mema and Great-mema have been tirelessly making little tube tops to cover and hold Gracie's central line and I think Great-mema is busy working on a few fashionable hats for Gracie's bald chemo head as well. I can't wait to see them. :)
Monday, March 31, 2008
Friday, March 28, 2008
ERT #7
Our 7th ERT was Wednesday and I must say, it was the best one so far. No mishaps at all, and the process went smoothly and much faster. We were really impressed. Gracie again did beautifully and she actually seemed to enjoy her dressing change. She stayed still and quiet through the entire process!
So despite our early experiences, it seems that Shands is finally catching up to our expectations. We had a nice chat with Dr. Kelly about Gracie's cord blood matches and upcoming transplant, and she is very confident that Gracie will do well. She is still very healthy and showing lots of improvement developmentally. She even brought Gracie a sweet teddy bear to play with. :)
Developmentally, Gracie is doing great. We're finally hearing some structured babbling- despite having no news from Early Intervention about speech therapy. Grrrr - I need to call them today. She's also sitting up on her own, playing with 2 toys at the same time, and trying to crawl and clap. We are so proud of her! She's still loving trying new foods... she's really taken a liking to papaya these days!
Anyway, we're slowly trying to gear up for our trip back to MN. I am excited to get going with Gracie's transplant while she's doing so well, but I must admit, I am not looking forward to being away for so long. :( I am going to miss our daily life here so much- our friends, family, and especially our church family are so important to us. I know that we will be well taken care of in MN, but as everyone knows, there's just no place like home.
So despite our early experiences, it seems that Shands is finally catching up to our expectations. We had a nice chat with Dr. Kelly about Gracie's cord blood matches and upcoming transplant, and she is very confident that Gracie will do well. She is still very healthy and showing lots of improvement developmentally. She even brought Gracie a sweet teddy bear to play with. :)
Developmentally, Gracie is doing great. We're finally hearing some structured babbling- despite having no news from Early Intervention about speech therapy. Grrrr - I need to call them today. She's also sitting up on her own, playing with 2 toys at the same time, and trying to crawl and clap. We are so proud of her! She's still loving trying new foods... she's really taken a liking to papaya these days!
Anyway, we're slowly trying to gear up for our trip back to MN. I am excited to get going with Gracie's transplant while she's doing so well, but I must admit, I am not looking forward to being away for so long. :( I am going to miss our daily life here so much- our friends, family, and especially our church family are so important to us. I know that we will be well taken care of in MN, but as everyone knows, there's just no place like home.
Tuesday, March 25, 2008
Matches confirmed!
We got word last week that our matches have been confirmed and testing is complete! They are ready for us to come back on April 14th. So, the plan is to go to MN on April 12th. I am so excited! Hopefully we'll be able to move into Ronald McDonald house immediately, but they stay pretty full so we have to make other arrangements for the first few days just in case.
Gracie has been doing so well. She's been such a happy girl and that makes Mommy and Daddy happy too. :) This week her cousins Nuvy and Van are in town so we've been busy doing lots of visiting and playing.
We had a wonderful Easter! I wanted to leave a pic or 2 of her in her beautiful BabyNV easter ensemble. So here they are.
Hope you all had a blessed Easter as well.Sunday, March 16, 2008
Wonderful news from U of MN!
So on Friday evening after a lovely dinner out with our wonderful church family, I got a telephone call from the University of Minnesota's Marrow Donation Center and they told me that the have 2 "beautiful matches" for Gracie- both of them are donated umbilical cords, exactly what we were hoping for! So far, testing is almost complete on both of them. The nurse who called said that they were both chock full of stem cells and that either of them should be more than enough for our little Peanut! Woohoo! I cannot tell you how exciting this news is for me. It has refreshed my hopes for Gracie and given me a new burst of energy regarding our monotonous treatments and endless doctor visits. We have a match... we have a new start for Gracie's life and a new reason to keep pushing forward with hope. I am really looking forward to returning to Minnesota and getting the show on the road.
Gracie is doing great as well. She's been her little crazy self as usual, but increasingly more and more social. I just love it. She's sitting up all on her own now and has even managed to get a little bit of forward momentum when she's lying on her tummy. No crawling yet, more of a squirming to reach whatever toy she's trying to get to in front of her. I suspect that she'll be pretty mobile soon, so I think its time to start thinking about childproofing. Yikes. Now there's a REAL challenge.
Gracie is doing great as well. She's been her little crazy self as usual, but increasingly more and more social. I just love it. She's sitting up all on her own now and has even managed to get a little bit of forward momentum when she's lying on her tummy. No crawling yet, more of a squirming to reach whatever toy she's trying to get to in front of her. I suspect that she'll be pretty mobile soon, so I think its time to start thinking about childproofing. Yikes. Now there's a REAL challenge.
Wednesday, March 12, 2008
8 months old and ERT #5
So Gracie turned 8 months yesterday and we had a pretty uneventful day. We did visit the world of Walls (aka Walmart) and found that our big girl LOVES to ride around in the cart. She was happy as a little clam in her buggy bag and she picked out a few new toys to take along with us to ERT today.
Speaking of ERT, it went well today. No major mishaps to report and Gracie was really great! She slept a lot and played some and even dozed off during her dressing change, which was a really pleasant change from her usual screaming fits during that lovely activity. She even let her favorite nurse Kathy hold her for a few seconds right before we left for our weekly retail therapy trip to Target. :)
We met up with friends Jenny, Brandon and Olivia in Target and had a nice dinner with them at Hops, where our Miss Gracie ate 2 containers of food- some pears with blueberry and of course, our beloved sweet potatoes. Boy, was she a hungry little monkey after our long day!
As much as I wish I could say that we have a nice leisurely day tomorrow, we have to be up bright and early in the morning to meet with the Early Intervention Speech Pathologist at 9. When they called to set up the appointment, I must admit that they didn't really instill much confidence in me regarding this particular therapy. The lady who called basically told me that their Speech Therapists don't really work with babies as young as Gracie and they wanted to know why we're even being referred to therapy at all. Grrr. Well, I'll be bringing a copy of the report from Dr. Bjoraker, the Neuropsychologist in Minnesota who is recommending the immediate therapy. This is yet another moment where I wish we were back at Fairview with doctors who really understand Gracie's condition. Its so frustrating to have to try and explain what her disease actually does to all these docs who have never heard of it. I guess I have to get used to that though, because as long as I have my Gracie, I will have to explain her condition to people. And thats definately better than the alternative so I need to stop my complaining. :)
My girl just seems to be doing better and better as each day passes. I am so pleased with how everything is going and I am so proud of my tough little trooper who is taking everything on like the champ she is. Her daddy and I could not be happier with her progress and we're looking forward to moving on with the next phase of treatment.
So to all of our readers, we ask that you all say a prayer for our friend Chance who will be having his Transplant Day in Minnesota tomorrow! Go Chance! We're looking forward to meeting Chance and his family when we return for Gracie's workup... he should be checking out of the BMT unit when we get back up there if all goes well for him. Chance and family- we're thinking of you guys often and sending lots of prayers and good thoughts for you.
Much love.
Speaking of ERT, it went well today. No major mishaps to report and Gracie was really great! She slept a lot and played some and even dozed off during her dressing change, which was a really pleasant change from her usual screaming fits during that lovely activity. She even let her favorite nurse Kathy hold her for a few seconds right before we left for our weekly retail therapy trip to Target. :)
We met up with friends Jenny, Brandon and Olivia in Target and had a nice dinner with them at Hops, where our Miss Gracie ate 2 containers of food- some pears with blueberry and of course, our beloved sweet potatoes. Boy, was she a hungry little monkey after our long day!
As much as I wish I could say that we have a nice leisurely day tomorrow, we have to be up bright and early in the morning to meet with the Early Intervention Speech Pathologist at 9. When they called to set up the appointment, I must admit that they didn't really instill much confidence in me regarding this particular therapy. The lady who called basically told me that their Speech Therapists don't really work with babies as young as Gracie and they wanted to know why we're even being referred to therapy at all. Grrr. Well, I'll be bringing a copy of the report from Dr. Bjoraker, the Neuropsychologist in Minnesota who is recommending the immediate therapy. This is yet another moment where I wish we were back at Fairview with doctors who really understand Gracie's condition. Its so frustrating to have to try and explain what her disease actually does to all these docs who have never heard of it. I guess I have to get used to that though, because as long as I have my Gracie, I will have to explain her condition to people. And thats definately better than the alternative so I need to stop my complaining. :)
My girl just seems to be doing better and better as each day passes. I am so pleased with how everything is going and I am so proud of my tough little trooper who is taking everything on like the champ she is. Her daddy and I could not be happier with her progress and we're looking forward to moving on with the next phase of treatment.
So to all of our readers, we ask that you all say a prayer for our friend Chance who will be having his Transplant Day in Minnesota tomorrow! Go Chance! We're looking forward to meeting Chance and his family when we return for Gracie's workup... he should be checking out of the BMT unit when we get back up there if all goes well for him. Chance and family- we're thinking of you guys often and sending lots of prayers and good thoughts for you.
Much love.
Friday, March 7, 2008
Ok, so a normal life update for our adoring fans
Gracie is a busy bee between all of our Dr. visits and infusions. She is currently a complete log roller. She can roll from back to front and front to back these days, so she rolls all over the place all the time. :) She also likes to roll onto her tummy and try to get her legs under her. Looks like she will be mobile pretty soon. So far the only progress she makes in that arena is to turn herself around, kind of like a hand on a clock goes around. Its pretty cute although she is easily frustrated at her lack of mobility right now.
She also can sit up completely unsupported. She's still a bit tippy, but for the most part she is getting pretty good at it.
New stuff- we got Gracie a new stroller for our return to Minnesota. Its way cool and around here we call it the Cadillac. :) Fancy contraption to the max! Gracie still has a bit of stranger anxiety, so I wanted a stroller that could have her face me or face out depending on how she's feeling that particular day. And as I looked for one, I realized that as simple as that requirement is, there are not many strollers that will do it. And those that do are pretty pricey. Well luck was on our side this past Sunday when on a whim we visited the local Home and Patio Show and saw that a baby store in Gainesville had a booth there. I spoke to the lady about my fruitless search and she pulled out this cool stroller that had an easily reversible handle and all-direction wheels. Cool stuff. She was giving us the demo and then she opened the canopy all the way and it seriously extends all the way down almost to the baby's knees! WOW! And with a light-sensitive baby like we have, that was a really attractive feature. It was still a bit pricey, so Jimmy and I decided to make another lap around the booths to think about it. The saleslady clinched the deal when she offered us a discount to take it off her hands right then and there. SOLD!
So far, Gracie seems to really love it. She seems really comfy in it and not anxious at all. We're all very pleased with the purchase so far. Now time will only tell if it can handle the snowy slush that will be awaiting us in Minnesota. :) You never know.
Here it is, the Bumbleride Flyer in Ruby Ruby. :)
Other than that, Gracie is just being Gracie. She loves jumping in her jumpy chair and pulling off her socks at every opportunity. She is enjoying trying some new foods... most recently pureed carrots and here are a few pics of her enjoying her dinner last night- pureed spinach and raisins. Yummy!
I'm strong to the finish, 'cause I eats me spinach!
She also can sit up completely unsupported. She's still a bit tippy, but for the most part she is getting pretty good at it.
New stuff- we got Gracie a new stroller for our return to Minnesota. Its way cool and around here we call it the Cadillac. :) Fancy contraption to the max! Gracie still has a bit of stranger anxiety, so I wanted a stroller that could have her face me or face out depending on how she's feeling that particular day. And as I looked for one, I realized that as simple as that requirement is, there are not many strollers that will do it. And those that do are pretty pricey. Well luck was on our side this past Sunday when on a whim we visited the local Home and Patio Show and saw that a baby store in Gainesville had a booth there. I spoke to the lady about my fruitless search and she pulled out this cool stroller that had an easily reversible handle and all-direction wheels. Cool stuff. She was giving us the demo and then she opened the canopy all the way and it seriously extends all the way down almost to the baby's knees! WOW! And with a light-sensitive baby like we have, that was a really attractive feature. It was still a bit pricey, so Jimmy and I decided to make another lap around the booths to think about it. The saleslady clinched the deal when she offered us a discount to take it off her hands right then and there. SOLD!
So far, Gracie seems to really love it. She seems really comfy in it and not anxious at all. We're all very pleased with the purchase so far. Now time will only tell if it can handle the snowy slush that will be awaiting us in Minnesota. :) You never know.
Here it is, the Bumbleride Flyer in Ruby Ruby. :)
Other than that, Gracie is just being Gracie. She loves jumping in her jumpy chair and pulling off her socks at every opportunity. She is enjoying trying some new foods... most recently pureed carrots and here are a few pics of her enjoying her dinner last night- pureed spinach and raisins. Yummy!
I'm strong to the finish, 'cause I eats me spinach!
Thursday, March 6, 2008
ERT #4
...went much more smoothly as far as the delivery of the Enzyme and such. We were pleased to make it out of Shands an hour earlier than usual and thats great considering that we got there an hour late too! We might have been out even earlier, but there were a few hiccups caused by Mommy that slowed things down a bit at times.
First, when giving Gracie the benadryl, I lost control of the syringe and squirted a bunch her mouth at once :( which she promptly spit right out. So, with part of her medicineon her shirt, we had to stop and check with Dr. Kelly to see if we needed to get more Benadryl or if we could just keep going without that little bit. It turned out to be fine but I felt terrible for not only delaying the treatment, but also doing that to Gracie and making her gag. :( I was so sad.
Then later in the day we had another little hiccup, although this one managed to almost give Mommy a heart attack. Gracie was still getting the enzyme and she was antsy. So she was playing on my lap for a few minutes and then decided that she wanted to feed. So I got her all latched on she starts to eat. After a few minutes she pulls off to smile at me :) and I notice that there's blood on the front of her outfit. I pull her away from me further and I see more blood. Well, I freaked, Jimmy turned off the drip and clamped her line, and then we put her on the bed and Kathy ran in. Turns out that we managed to disconnect the drip line from Gracie's central line, so the blood was coming from her open central line. Well, I am panicking at the blood all over her and me and then Jimmy and Kathy just smile at me and giggle because what looks like a lot of blood is actually only 5-10 ML... less than what they take from her as waste before her blood draws. I actually got some praise for catching the bleeding so fast... it didn't waste enzyme or anything. Woot!
I still felt terrible though. :(
We made it through the rest of the afternoon with no more problems and the next thing I knew, it was time to go home. Yay.
We met some friends for dinner when we got here and had a very nice evening. Gracie ate an entire bowl of sweet potatoes and charmed everyone as always. What a sweetie.
First, when giving Gracie the benadryl, I lost control of the syringe and squirted a bunch her mouth at once :( which she promptly spit right out. So, with part of her medicineon her shirt, we had to stop and check with Dr. Kelly to see if we needed to get more Benadryl or if we could just keep going without that little bit. It turned out to be fine but I felt terrible for not only delaying the treatment, but also doing that to Gracie and making her gag. :( I was so sad.
Then later in the day we had another little hiccup, although this one managed to almost give Mommy a heart attack. Gracie was still getting the enzyme and she was antsy. So she was playing on my lap for a few minutes and then decided that she wanted to feed. So I got her all latched on she starts to eat. After a few minutes she pulls off to smile at me :) and I notice that there's blood on the front of her outfit. I pull her away from me further and I see more blood. Well, I freaked, Jimmy turned off the drip and clamped her line, and then we put her on the bed and Kathy ran in. Turns out that we managed to disconnect the drip line from Gracie's central line, so the blood was coming from her open central line. Well, I am panicking at the blood all over her and me and then Jimmy and Kathy just smile at me and giggle because what looks like a lot of blood is actually only 5-10 ML... less than what they take from her as waste before her blood draws. I actually got some praise for catching the bleeding so fast... it didn't waste enzyme or anything. Woot!
I still felt terrible though. :(
We made it through the rest of the afternoon with no more problems and the next thing I knew, it was time to go home. Yay.
We met some friends for dinner when we got here and had a very nice evening. Gracie ate an entire bowl of sweet potatoes and charmed everyone as always. What a sweetie.
Wednesday, March 5, 2008
ERT #4 today
...and I'm a bit worried. Gracie has had a cold for a week now and she sounds terrible. She's congested and stopped up and has this terrible hacking phlegmy cough. Its yucky. :( I hope this doesn't effect or delay her treatment today. I must admit, its a bit scary to hear her breathing be so noisy like this and those awful coughs. Breaks my heart.
Tuesday, March 4, 2008
ERT effects thus far
So I must say, I have gotten so many comments from family and friends that Gracie seems to be a much happier baby, and that she even looks a bit better since she has been on ERT... and even from week to week.
I have to agree. Gracie has been much less fussy in general and seems to be happier and easier to entertain these days. I absolutely love it.
She still maintains a great appetite - sweet potatoes are her very favorite food, and she loves to play with her toys and in her jumpy chair. Its wonderful! Now if I could get her to go to bed a bit earlier, all would be right with the world. ;) I am definately looking forward to seeing how she progresses after more ERT treatments.
Eileen, our ERT nurse from Minnesota called yesterday to check in. Nice chat. They're still planning on having us back on April 14th, and I must admit, I am looking forward to it. I really miss the people there and of course, the great medical care.
Still waiting to hear from Early Intervention regarding Gracie's speech therapy. At this rate, we'll be back in Minnesota before it even gets started. Grrr.
Anyway, I just wanted to check in with everyone and update you on Gracie's progress. I am really happy to see her blooming.
Here's a cute pic of our princess from last week. Sorry for the blurry quality, it was from my camera phone. :)
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